Family Advocacy Day 2022 emphasizes need for Congress to prioritize kids’ health

This week, 40 patients from 32 children’s hospitals nationwide – including Children’s Minnesota – participated in the 17^th annual Children’s Hospital Association (CHA) Speak Now for Kids Family Advocacy Day to elevate the health needs of kids across the country, and raise awareness about the critical role children’s hospitals play in the community. Our 2022 Children’s Minnesota Champion, Emmily, 18, and her mother, Amy, met virtually with lawmakers to share their experience at Children’s Minnesota, and also advocate for programs that support families’ ability to access pediatric care providers.

Emmily and her mother met virtually with Representative Pete Stauber, and spoke remotely with staff from the offices of Representative Dean Phillips, Representative Angie Craig, Representative Betty McCollum, Senator Tina Smith and Senator Amy Klobuchar.

Emmily’s Children’s Minnesota story

When Emmily was 13-year-old, she began feeling sick after a volleyball tournament and eventually tested positive for Influenza B. The day after her test, the teen was having trouble breathing, so her mom brought her to urgent care where she was immediately taken by ambulance to the emergency department at Children’s Minnesota in St. Paul.

Emmily endured respiratory distress and then septic shock, so her Children’s Minnesota care team placed her in a medically-induced coma and transferred her to the Minneapolis pediatric intensive care unit (PICU). On Emmily’s eleventh day in the hospital, she was placed on veno-venous (VV) ECMO to try and help her lungs rest and heal. ECMO stands for extracorporeal membrane oxygenation. In total, Emmily spent 10 of her 13 weeks at our Minneapolis PICU on ECMO.

“At the time it was her last option, and her journey would be far from typical,” said Amy, Emmily’s mom.

Emmily persevered through a variety of procedures to care for the severe damage in both of her lungs. She spent five-and-a-half weeks on a breathing tube, and was then given a tracheostomy – a surgical opening made in her neck into her trachea to help her breathe. About 10 weeks into Emmily’s stay, she started to slowly make progress.

After three months, Emmily was discharged from Children’s Minnesota. She’s now 18-years-old and using her story to elevate issues deeply important to many children and families across the country. Thank you, Emmily for being our courageous 2022 Family Advocacy Day Champion!

Read more about Emmily’s Children’s Minnesota story.